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Author
Topic: Reducing the dose of HIV drugs (Read 21522 times)

Due to concerns around side effects, I've been taking a half dose of Truvada along with the full dose of my other medications which are Darunavir and Norvir, which I started just over 4 months ago. My viral load has recently dropped from over 100k to undetectable and my CD4 count is around 330, up from 80 when I first started. I've been monitored regularly and my doctor has been happy with the rate of progress.

I'm now considering taking lower doses of Darunavir and Norvir, but am undecided at this point. As Norvir is a 'booster' drug, it might perhaps make sense to keep that at its recommended level and just halve the dose of Darunavir.

So I'm interested to hear if anyone else has experimented with taking less than the prescribed dose of their HIV medication and what the outcome was.

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''Poor is the man whose pleasures depend on the permission of another.''

I totally understand your concern with side effects. But self dosing is not a good idea for any medical condition. I would definately discuss your concerns with your doctor. I know a lot of science goes into the recommended daily dosages on all medicines and there is a lot of testing before the drug is put on the market. You may be risking resistance vs some side effects. I would stick with taking your meds how they are prescribed. I know its scary, but hang in there and there is a lot of support here on this site.

I think it's dangerous, to be messing around with the dosing of your drugs, or by taking a less amount then is required, Unless you are under Doctor's supervision.Something you may want to google, is "TDM and HIV medications" ( therapeutic drug Monitoring) It may give you some answers to your questions.

...which I started just over 4 months ago. My viral load has recently dropped from over 100k to undetectable and my CD4 count is around 330, up from 80 when I first started.

am I reading you right? You've only been on meds for 4 month and just recently dropped to UD?

I wouldn't say that less than 4 months was anywhere near enough time to claim that your virus was "successfully suppressed". Maybe if you had kept your viral load suppressed for a year (or more!) then you could discuss with your doctor about cutting the dosage amt; but doing it this early in the game seems just entirely too risky.

Many people mistakenly quit taking their meds when they begin to feel better or when their numbers finally get better (ie cd4>200, VL = UD). Fortunately ARVs work great but they must be taken constantly to keep the viral suppressed enough to not be able to replicate.

by the way, what side effects are you worrying about? Side effects that you are currently having or side effects that you imagine you could have at a future date? If you're not having any side effects now, you're risking your health for something that might not even happen (check the package insert on your meds to see the low actual percentages of people who experience side effects). If you're having side effects now, you should speak to your doctor about doing something to deal with the side effects or about changing to another regimen.

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leatherman (aka mIkIE)

All the stars are flashing high above the seaand the party is on fire around you and meWe're gonna burn this disco down before the morning comes- Pet Shop Boys chart from 1992-2015Isentress/Prezcobix

''Many people mistakenly quit taking their meds when they begin to feel better or when their numbers finally get better (ie cd4>200, VL = UD). Fortunately ARVs work great but they must be taken constantly to keep the viral suppressed enough to not be able to replicate''.

You've misunderstood. I've not mentioned anything about 'quitting' my drugs and have no intention of doing so.

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''Poor is the man whose pleasures depend on the permission of another.''

You've misunderstood. I've not mentioned anything about 'quitting' my drugs and have no intention of doing so.

Sorry, I think you misunderstood what I was driving at. Equating "feeling better" only 4 months into therapy as being a reason to reduce the dosage is of the same mindset as those who go off of meds for that same illogical reason. You may not think that your actions are in a similar vein but they are. Reducing the dosage this early in your treatment is as illogical as those who go off their meds because they feel better, or because they have already reached UD.

At 4 months, I don't think you can hardly say that you have had "successful" treatment. How long have you actually been taking this "reduced" dosage? Obviously less than the 4 months as that's how long you say it took treatment to get you to UD. I would suggest to you in the short time that you have been taking a reduced dosage, that you very well could have allowed the virus to be mutating, building up resistance.

You see, unlike some other meds where you can skip doses and still be "ok", it has been proven that being less than 95% adherent can lead to a point of the virus becoming resistance to the meds. Taking a half dose is much closer to 50% adherence than 95%. Still this early in treatment, this could all very well show up within the next 2 months of labwork. I hope not; but this problem could very well be underway.

Sadly, I have some experience with this kind of issue myself. Twice back in the mid 90s when the meds were much harsher and the side effects would literally destroy your quality of life (not a "concern" about side effects but the real thing), I slowly reduced my med dosage and eventually quit them all together (as a true quality over quantity of life issue), so I understand the mindset of "feeling better", of being concerned about side effects, and about going against the science and reducing the dosages. I also ended up in the hospital with an OI, extremely low cd4s, and skyhigh viral loads within 9 months each time. While I laid there, perhaps dying both times, I had to explain to a doctor why I thought I knew better how to "treat" myself rather than following the prescription.

I would probably have a totally different opinion if you were a year or more into treatment and had a trend, reoccurring labwork, proving your treatment was "successful"; but you really seem to be playing with fire at this point in the game. And please don't misunderstand my comments or tone. I say all of this out of concern. Taking antiretrovirals (chemotherapy) off-label is not something that should be done lightly, nor really by someone so early in their treatment. I am really gravely concerned that you may be causing a problem a lot bigger than any side effect that you might be concerned about.

However, you haven't yet given up any good reasons for your actions. Are you actually having side effects? Then you could ask to change to another regimen, or ask for monitoring as a doctor guides you through reducing the dosage. But if you doing this because you are worried about some future malady, then what if this action is what actually causes that future malady??

Of course, you can do as you please; but I would suggest that you get monitored more frequently over the next 3 months keeping a watchful eye out for any change in your numbers. I would also suggest talking to your doctor about this; but he'll probably just hassle you (as I have ) to get back up to the correct dosage ASAP too. LOL

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leatherman (aka mIkIE)

All the stars are flashing high above the seaand the party is on fire around you and meWe're gonna burn this disco down before the morning comes- Pet Shop Boys chart from 1992-2015Isentress/Prezcobix

but this is my third combination in a year so am trying to stick with it for now to see if they calm down.

going through 3 regimens in a year really does not equate to "successful" treatment at all. much less calling it successful in the 4th month of that 3rd regimen. You really should work on sticking to some regimen for at least a year to work out all the side effect problems (hives, lack of appetite, nausea, IRIS etc) that you've been going through, and to regain your health over some time, before trying something risky like taking an un-approved dosage of the meds. just sayin'

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leatherman (aka mIkIE)

All the stars are flashing high above the seaand the party is on fire around you and meWe're gonna burn this disco down before the morning comes- Pet Shop Boys chart from 1992-2015Isentress/Prezcobix

Leatherman: Thank you for your posts. I noticed that you twice quoted 'feeling better'. I'm not sure why as this was not something that I'd said. This, I have to say, gives your response something of a 'straw man' feel.

Also, I did not say that 'going through three regimes in year equated to successful treatment'. My point was my current treatment has, thus far, been successful using standard clinical measures. I have been taking a half dose of Truvada since I started this regime and my viral load was shown to be falling with each assay until it became undetectable in November. As I'm sure you are aware, the goal of HAART is to supress the virus to U/D levels therefore doctors would consider this regime to be 'successful' and, presumably, will continue to do so as long as the viral load remains at such a level.

This is obviously quite different to the point you were at in the mid 90s where you experienced 'extremely low cd4s, and skyhigh viral loads' after abandoning your medication.

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''Poor is the man whose pleasures depend on the permission of another.''

''Many people mistakenly quit taking their meds when they begin to feel better or when their numbers finally get better (ie cd4>200, VL = UD). Fortunately ARVs work great but they must be taken constantly to keep the viral suppressed enough to not be able to replicate''.

You've misunderstood. I've not mentioned anything about 'quitting' my drugs and have no intention of doing so.

so then be precise - what exactly are you saying?

Due to concerns around side effects, I've been taking a half dose of Truvada

Yes, great idea -- build up resistance to the one NRTI class med that's used with every HIV med combo these days. It never ceases to amaze me how the new-to-HIV patients throw caution to the wind like it's as simple as eating a piece of meringue pie.

I noticed that you twice quoted 'feeling better'. I'm not sure why as this was not something that I'd said.

in your first post you said you were concerned about side effects, so I took you at your word that you were having side effects and by taking half the dose you were mislead by "feeling better" ie not having the side effect. Obviously since you won't talk about these concerns about side effects, I have to wonder if you actually have not been having any side effects, and have been concerned about something that hasn't even happened - and might not happen.

Also, I did not say that 'going through three regimes in year equated to successful treatment'. My point was my current treatment has, thus far, been successful using standard clinical measures. I have been taking a half dose of Truvada since I started this regime and my viral load was shown to be falling with each assay until it became undetectable in November.

now, you tell us that you started this regimen on less than the prescribed dose. Do you not understand that these meds can work at that level - for a while. During the time they are working, your viral load will descend. Of course, until the virus finally starts mutating against the inadequate level to keep it fully suppressed and your viral load begins to ascend once again. Four months might not be enough time to temporarily suppress the virus, begin it's mutation, and raise the viral load.

You would think that having already gone through so many regimens that you would be following the dosing guidelines to the tee as you are quickly burning through the available meds. I'll tell you something else from experience, sitting around for months with no other available medication to take is a scary thing - and potentially deadly.

Also, I did not say that 'going through three regimes in year equated to successful treatment'. My point was my current treatment has, thus far, been successful using standard clinical measures

Barely reaching UD, and having gone through 3 regimens in one year is NOT successful treatment. No way, no how. Successful treatment is using one regimen to keep you UD for a yr or longer.

If your next labs show a blip up in the VL, then how successful will this regimen (half regimen, I should say) have been? HIV lab results should be considered over spans of time, looking at the trends. One lab of UD means nothing without surrounding equal results within a 2-3 month time span.

This is obviously quite different to the point you were at in the mid 90s where you experienced 'extremely low cd4s, and skyhigh viral loads' after abandoning your medication.

well, i had thought I could make my advice have greater weight and sympathy, and be more palatable, by explaining how I could understand because in yrs past, I too took reduced dosages, went off meds, worried about real side effects (although I must admit the only side effect that I've really experienced with any of the 17 ARVs I've taken is throwing up - daily with many of the older meds) and had even hit a wall with no more meds available.

but who I am to give advice to someone who starts their third regimen in one year (!!!) by cutting the dosages in half (to ward against non-existant side effects) and has barely spent any time at UD? You obviously know better than science, your doctors and the experiences of others, so I guess all I can honestly offer you now is to say "good luck and best wishes" with your potentially risky self-medication.

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leatherman (aka mIkIE)

All the stars are flashing high above the seaand the party is on fire around you and meWe're gonna burn this disco down before the morning comes- Pet Shop Boys chart from 1992-2015Isentress/Prezcobix

Yes, great idea -- build up resistance to the one NRTI class med that's used with every HIV med combo these days. It never ceases to amaze me how the new-to-HIV patients throw caution to the wind like it's as simple as eating a piece of meringue pie.

Except that I'm not new to HIV.

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''Poor is the man whose pleasures depend on the permission of another.''

I experimented with taking mine everyday as prescribed - in the dosage prescribed - and have just received my highest cd4 level counts since being diagnosed (740 with a cd4% of 41), undetectable VL and no side effects (other than the occasional hangover from having one too many Coronas). I'm one of those daring scientists who really takes risks ---- naw, really I'm just a patient who believes in leaving the research and dosage prescribing to those with the experience to do so or to those who are okay with the potential consequences of playing the triple role of doctor/researcher/patient.

You never say what side effects you are experiencing that are so terrible that you need to reduce your dosage. I recently started meds and besides from some minor side effects it has been relatively easy. What are you experiencing that is so bad you have decided to risk your health over?

really I'm just a patient who believes in leaving the research and dosage prescribing to those with the experience to do so or to those who are okay with the potential consequences of playing the triple role of doctor/researcher/patient.

ditto

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ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

''it does not matter that the meds are Super super potent , or super potent , or simply potent as long as they are potent enough.''

This is what I find interesting. So presumably this means that a proportion of patients are taking a 'super potent' dose when a 'simply potent' dose would suffice.

As for side effects, it's more a concern over long-term issues which apply to HIV drugs in all classes.

The doses recommended by the research and normally prescribed by doctors are the "simply potent" doses. Taking less is usually considered not potent enough, barring extreme circumstances. They do plenty of research into proper dosing when developing medications, it isn't something one should be messing around with without serious proper monitoring and advisement of a competent HIV specialist.

As for side effects, it's more a concern over long-term issues which apply to HIV drugs in all classes.

Why aren't you worried about the VERY possible long-term issue of developing resistance to Truvada, which would mean that most of the drugs in the whole class would be rendered useless to you?

What you're doing without the benefit of therapeutic drug monitoring is foolhardy in the EXTREME. You have been asked what your doctor thinks about what you're doing and you have ignored the question, so I can only surmise that he does not know and you have not told him because you know that he'd tell you off.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

In my considered opinion, with half dose Truvada plus a boosted PI the Truvada is doing nada, why not just go for boosted PI monotherapy, probably very kind to the body (and maybe protective against malaria)?

Less drugs is an admirable ambition, who wants to take shed loads of chemotherapy? But to my mind tis important not to cut off the nose to spite the face. I mean, resistance and rising viral load always complicates life, and I like it simple (and well).

The doses recommended by the research and normally prescribed by doctors are the "simply potent" doses. Taking less is usually considered not potent enough, barring extreme circumstances. They do plenty of research into proper dosing when developing medications, it isn't something one should be messing around with without serious proper monitoring and advisement of a competent HIV specialist.

odyssey

And yet on the Poz forum blog, which was linked in this thread above, someone has written about taking Atripla one week on, one week off successfully for three years with their doctor's knowledge, so it doesn't seem to be quite as black and white as some would argue.

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''Poor is the man whose pleasures depend on the permission of another.''

And yet on the Poz forum blog, which was linked in this thread above, someone has written about taking Atripla one week on, one week off successfully for three years with their doctor's knowledge, so it doesn't seem to be quite as black and white as some would argue.

Not Atripla, I believe he's on Reyataz/Norvir/Truvada but yes, he takes them one week on one week off.

It would be riskier to do that with Atripla due to Sustiva's half-life, although the FOTO study showed that "five days on, two days off" could work for some taking Atripla.

I believe that many of us are taking more meds than we should but it's risky to play around with it.

I'd like to simplify my regimen at some point and I think in the near future many of us will be able to, depending on one's resistance profile and treatment history.

I have tried playing around with dosing at times, myself. Got a little old, having zero energy and getting seriously odd, rare OIs that would only show up when I restarted my regimen.

It may take you years to get to that point. But the deterioration does not happen overnight. And it's shocking how when you sink slowly, you fail to notice until finally you are isolated, having forgone friends and social engagements, with barely enough strength to do the necessary - if that.

But if you are like me, you will have to find out for yourself.

Best of luck.

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"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

And yet on the Poz forum blog, which was linked in this thread above, someone has written about taking Atripla one week on, one week off successfully for three years with their doctor's knowledge, so it doesn't seem to be quite as black and white as some would argue.

One week on, one week off, is a helluvalot different to taking a sub-optimum dose of two of your meds daily. You're just asking for resistance.

And as you admit, Shawn's (we know who you're talking about) doctor knew what he was doing. Does yours? Like I said earlier, I doubt that very much as you have studiously ignored the question.

Mate, it's your life. Risk resistance if you want, but I will not allow you to advocate it on my watch.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

A Randomised, Controlled, Open-label Trial to Compare the Efficacy, Safety and Tolerability of a Treatment Simplification by Darunavir/Ritonavir (DRV/r) 800/100 mg O.D. vs a Triple Combination Therapy With DRV/r in HIV-1 Infected Patients With Undetectable Plasma HIV-RNA on Their Current Treatments.

there may be others...

The question of treatment Simplification itself is legitmate. Some people are risking their lives under strict medical control to find out if treatment Simplification is doable and if so under which circumstances.

The research is legit.

Research data and personal patient's experience are different stories.

The OPs, so far unsuccessful, attempt to collect personal experience from forum members with regards to this matter can not be ignored.

The facts are that the on going research on this treatment Simplifications has not been completed.

IMHO, the prudent approach, for those interested in treatment Simplification is to WAIT for those results.

Some trials come out with negative results (see once a day Raltegravir/Isentress, for example...)

The facts are that treatment failures or lack of treatment (mostly due to lack of $$) do end miserably

I fully agree that the perspective that someone, with access to meds, with no urgency for taking less meds, would want to take that risk for fear of 'potential' long term SEis inconceivable, at this point.

Side question: on a risk scale which one is the riskiest in 2010: (among some personal decisions that are currently somewhat discordant with medical consensus )

under incomplete meds, there is a risk to SELECT a 'potential' resistant strain/mutant.under no meds , there is a risk to LET resistant strains/mutants come to existence (the fact that they stay under the radar, does not mean that they are not underlying...)

Mate, it's your life. Risk resistance if you want, but I will not allow you to advocate it on my watch.

Ann - I'm not 'advocating' anything. I've asked for peoples experiences but haven't once suggested that this is what anyone else should be doing.

I believe that people have a very personal relationship with their medication - whatever it's being taken for - so it would go against my philosophy to promote any specific approach. People have to do what's right for them.

« Last Edit: December 24, 2010, 11:16:30 AM by Zohar »

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''Poor is the man whose pleasures depend on the permission of another.''

Ann - I'm not 'advocating' anything. I've asked for peoples experiences but haven't once suggested that this is what anyone else should be doing.

I believe that people have a very personal relationship with their medication - whatever it's being taken for - so it would go against my philosophy to promote any specific approach. People have to do what's right for them.

Fair enough, but I still think you're being foolhardy. And as you are still ignoring the questions about what your doctor thinks about this, I'm still assuming that you have not consulted with him about it. Also very foolhardy. But it's your life and your potential resistance profile.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

As an analogy, there are some people who don't believe in waiting to start treatment and that all patients with HIV should be on medication regardless of their CD 4 count and viral load and I've witnessed on these forums people being told they are 'playing with fire' for not doing so. This is not my view, but if someone wishes to start treatment 'early' then far be it from me to tell them otherwise.

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''Poor is the man whose pleasures depend on the permission of another.''

I have tried playing around with dosing at times, myself. Got a little old, having zero energy and getting seriously odd, rare OIs that would only show up when I restarted my regimen.

It may take you years to get to that point. But the deterioration does not happen overnight. And it's shocking how when you sink slowly, you fail to notice until finally you are isolated, having forgone friends and social engagements, with barely enough strength to do the necessary - if that.

In what ways did you 'play around with dosing'?

You mention 'restarting your regimen', which implies you stopped taking your drugs at some point. Would that be correct?

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''Poor is the man whose pleasures depend on the permission of another.''

I've seen TDM mentioned here a few times--have you thought about trying it? It seems like the best starting point for what you're trying to do.

He certainly won't be doing this.... From reading this thread it is clear that he wants no evidence that might point to his making a mistake in his approach. He has his belief and he's going to stick with it -- even if it, quite literally, kills him. Why do I say this? If he won't even answer the question as to if his doctor knows what he's doing, then (as Ann says) it is safe to assume that his doc does not know. Why isn't he telling his doc?? because then he would get some "evidence" that he shouldn't be playing with fire. Sad really that he can't see that people here are actually trying to help him -- , it's not what he WANTS TO HEAR however............

At the end of the day -- it's his life, his choice -- he'll probably come back some day and ask if anyone has experience with dealing with a virus that is resistant to key drugs.

I agree, the relationship with meds is personal, but the virus' relationship with meds is chemical and it don't care what you think or feel.

It is highly likely a cut-down combo will work, but there are ways and means to do it, first of all come clean with your doc, he/she will want to find the best solution for you, ideally one that works. You won't be the first and certainly not the last he/she has seen with your reduced meds ambition.

And if a cut-down combo don't work then you can decide how you feel, about meds, life, yourself etc.

At the moment the half-dose Truvada is doing nothing. You are effectively on a boosted PI alone. This works often, why not just go for it?

Side effects are often in the mind, not the body, the drugs, depsite the reporting, are mainly not toxic, short term or long term. People like to think they are tho, but personally, I'd rather take combo than antibiotics or enough alcohol to have a hangover. It's kinder.